ANUK conference 2019


Conference 2019 Learn about aniridia and related conditions from each other, and professionals in medical and related fields. Find out how those affected by aniridia deal with it every day. Contribute your experiences, ideas or skills to help others. Expert presentations Dr Simon Hayhoe from Bath University Inclusive Technologies for VI people Dr Ngozi Oluonye from Great … Continue reading ANUK conference 2019

Guest post: Audio described tours at Tate


Dear Friends, This is a message from Marcus at Tate in which I would like to wish you a very happy new year, and to tell you about Tate’s Audio Description tours for Blind and Partially Sighted visitors in January and February. Our first tour of the year is at Tate Modern, and takes place … Continue reading Guest post: Audio described tours at Tate

Guest post: Mélissa’s story of acquired nystagmus


Mélissa was a healthy young woman, living and working in Canada until suddenly she acquired nystagmus and everything changed. Melissa is now adjusting to her new life with nystagmus and wanted to share her story of hope for the future … My beautiful, wobbly world My name is Mélissa Khalifé, I’m 30 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus

Guest post: Harry’s back at school!


Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation. Ian writes: “Harry’s eyes are now nothing but a slight irritation and, apart from … Continue reading Guest post: Harry’s back at school!

Guest post – Harry’s recovery from surgery continues


Harry and his family continue their post surgery journey. Ian writes: On day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision is settling down and he is able to see much better. He is still having to have eye drops 4 times a day for the … Continue reading Guest post – Harry’s recovery from surgery continues

Guest post – one week after Harry’s null point surgery


Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation it was time for father and son to have a chat about how things had gone. Ian continues: On the Sunday post operation I had … Continue reading Guest post – one week after Harry’s null point surgery

Guest post – Harry’s null point surgery


Ian is sharing his thoughts and experiences as his son undergoes Anderson Kestenbaum surgery this summer to address the head turn associated with his null point. In this post he recalls the day of the surgery: We had to be there at 8.00am and Harry was in really good spirits. He went down to the … Continue reading Guest post – Harry’s null point surgery

Guest post – questions for Harry’s consultant


Harry and his parents had many, many questions before finally deciding to go ahead with null point surgery. Here are just some of the questions the family asked, with the answers they received from the surgical team: Is this a complicated procedure? Yes. Operating on eyes in general is complicated, but when 2 eyes are to … Continue reading Guest post – questions for Harry’s consultant

Guest post – Harry’s null point surgery decision


15 year old Harry has undergone the Anderson Kestenbaum procedure this summer. Parents often ask what null point surgery involves. Thorough consultation with the ophthalmologist and the surgical team are key.  Harry’s Dad, Ian, asked us to share his son’s experience. Ian, writes: My son, Harry is now aged 15 and was born with idiopathic nystagmus. … Continue reading Guest post – Harry’s null point surgery decision